Day 5210 - Grayson's Journey

Well, here we are again!

It’s been almost 10 years since Grayson’s implantable cardioverter defibrillator (ICD) was replaced, so here we are again having ICD #4 implanted. The good news is that technology continues to improve, so that the devices last longer. The bad news is that they don’t last forever. In Grayson's case, the battery crossed the threshold for replacement in late December, and replacement was scheduled for today.

We are at Keck Medical Center of USC and Grayson was just wheeled into surgery for the replacement procedure. Regina was with him while he was being prepared, and reported that as soon as he was in his gown and laid down on the gurney, he became scared and started to cry. She was able to calm him down before they took him away, but she said it about broke her heart.

We are hoping that this time it will be an outpatient procedure, and that he will come home with us this evening. However, there is a chance that he may have to spend the night. We will know more later today.

We are hopeful that all will go well, and that life will be back to normal quickly. I will update as we know more.

Bless you all for your continued love and prayers.

Pax!

Brant

Day 4834 - Grayson's Journey

Greetings after almost 7 years! Clearly this blog was originally created to communicate day-to-day information on our injured boy, and daily change is no longer on the level it was a decade ago. For those that still tune in, thank you!

Today was a milestone day for Grayson. Today marked the 800th ski day since his injury, and that first day on snow with Disabled Sports Eastern Sierra back in early 2011. I can't describe that day without breaking down in tears, even after 12 years. 

Today, Grayson loves his skiing, even if he has to get up early! He flies down the mountain at a pace he decides, and he is always in control. He is adept at avoiding rocks, trees, and other bipeds. If things are unfamiliar or unusual, he slows way down. His skis are an extension of his body, and, while not perfect, he knows how to maneuver in almost any terrain. Given a choice of going in or skiing, he always chooses skiing. 

While this is not the life we expected for Grayson, it is a good life. He is happy, enjoys the outdoors sliding on the snow, and he enjoys the company he has all over town, but especially those on the hill. The lift operators (lifties), food service friends, regular (non-adaptive) mountain instructors, and mountain Hosts, all greet him by name and with high-fives. Other instructors that ski with us comment that they didn't know that they would be skiing with a celebrity! This affection shown my adult child by the people that he sees on the mountain is truly touching. 

So thank you DSES, Mammoth Mountain employees, the food services employees of Levy, and all of my friends in Mammoth Lakes for the love and affection that you show us every day. 

800 days of skiing after fearing that Grayson would never walk again. If you don't believe in a higher power, think again.

We love you all.

Pax!

Brant

Day 2333 – Grayson’s Journey

Today is a milestone day. Today marks the 200^th day that Grayson has skied since his injury in 2009.

In November of 2009, we had no idea if Grayson would ever walk again – he was a writhing mass in ICU in the aftermath of a brain injury so severe that life itself was a question mark. Yes, he is still severely cognitively handicapped. He still requires round-the-clock attention. That will not go away. But he doesn’t simply exist – he is enjoying life! He laughs, he listens, and he skis. Oh, how he skis! When he skis, he is like a bird on wings, freed from the bonds of his injury. He is so fun to watch. His form isn’t perfect, but he can go just about anywhere on the mountain – and go he does! 58 days last year, and 43 days so far this season and it isn’t over yet!

It would be inappropriate of me not to give credit to Disabled Sports Eastern Sierra, its founder Kathy Copeland, Mark Spieler, the wizard of all things that slide on snow, Cara Leonard who asked all of the right questions when I first called, and Laurel Martin who always knows the appropriate answer. For all of your work, counsel, education, and flexibility in dealing with us these past 6 seasons, Regina and I are eternally grateful. To all of the other staff, interns and volunteers that give their time to ski with us, you all hold a special place in our hearts. Thank you seems inadequate. I will just say the we love you all – because we do!

For all who have kept Grayson in their prayers, and who have not forgotten him, thank you! This is a long road, and we have only traveled the first leg. It is a journey, not a destination!

Pax!

Brant

Day 1686 – Grayson’s Journey

Dear Family and Friends

Grayson is home!

He was discharged at 2:00 PM this afternoon and, after a stop at the pharmacy for some antibiotics, we arrived home around 3:00. Most of our morning day was spent waiting to be discharged, then the last two hours were spent waiting for the antibiotic prescription we needed before we could leave. It is always frustrating to see how long the simplest of things seem to take in the medical world! The good news is that we made it home and all is well.

We were home in time for me to make it to the 3^rd anniversary of my 40^th high school reunion. I went to such a small school that all of the classes around us knew each other very well. So this year, as last, the classes of 1972, 1973 and 1974 all gathered for a reunion filled with much merriment! It was great to see all of these friends again. It has been even more wonderful to reconnect with these folks and see what wonderful things have happened in their lives. While most of us had been out of touch before the start of these reunion weekends, many of us are now communicating again. Ah the wonders of Facebook! We gather for brunch tomorrow before heading back to our various corners of the globe.

As I head off to bed, Grayson is sleeping peacefully – all snuggled in his own bed. Blessings abound!

Pax!

Brant

Day 1685 – Grayson’s Journey

Dear Family and Friends

Good news and bad news today. Fortunately, the bad news is not terrible and the good news is plentiful!

First the bad news – Grayson has to spend another night in the ICU. That isn't so bad for Grayson as he gets to watch WAY more TV then we would allow! Regina, on the other hand, will be spending her night sleeping in a chair with one eye open, next to Grayson. The reason for another night is simply the slow adjustment to the removal of all of the "stuff" and general caution – ventilator weaning, catheter removal, wound care, gradual adjustment to non-sedation, starting to sit, stand and walk again, eating, passing fluids – you get the drill.

The list of good news is far longer! He was weaned off of his sedation mid-morning but kept on a drug to limit anxiety. His vent was removed at half-past noon and that changed his mood from agitated to happy. This afternoon he stood and was moved from his bed to a chair. All IVs were stopped at that point. He had his first meal (clear liquids) since a light breakfast Thursday, and his catheter was removed this evening. All in all, he is almost ready to come home!

The plan for the morning is to have him walk around, as he is only tethered to the EKG and BP machine. After that, it is time to be discharged – something that always seems to take way longer than it should! As unusual as it is, it appears that he will be going from the ICU to home. Youth is a wonderful thing when it comes to rapid recovery!

We visit his cardiologist next week for a follow-up, and this device (his third since 2004) should be good for another 5 to 7 years. For the next 2 weeks we will need to keep his left arm from moving over his head (not a small task) but we are now in recovery mode!

Regina and I thank you for your prayers, thoughts and kind words. This was a scary reminder of those days in 2009 where we lived in the ICU for 3 weeks. Fortunately, this was a much easier trip.

Pax!

Brant

Day 1684 – Grayson’s Journey

Dear Family and Friends

The news from the hospital is GOOD!

At 2:30 PM yesterday, Grayson underwent a 4 hour procedure to replace his implantable cardioverter defibrillator (ICD) and both of the leads. (The ICD monitors the heart through a lead that is placed in the heart, and should therapy be needed, it can be administered through another lead.) Both leads had become compromised since their original placement in 2004 and needed to be removed. The battery in his ICD was also at end of life, therefore the device needed replacement. The ICD is surgically implanted in his left breast about 2 inches above his nipple and the leads run from the device, through a blood vessel into his heart. As you might imagine, this procedure is delicate and fraught with some risk. The procedure was done under general anesthesia.

The procedure was successful. Both of the old leads were successfully removed with no damage, new leads were placed, and a new ICD was successfully implanted and tested. Grayson is young relative to the general population that receive ICDs. As a result of his youthful, tight skin (ah don't some of us wish!), it is a bit more difficult to squeeze this additional stuff inside his breast and have the skin stretch over easily. It was accomplished, but we expect that Grayson will be more than a little sore when he wakes up.

Which brings up the next point. His team of physicians felt that recovery would be significantly enhanced should Grayson be kept out under mild sedation and comfortable with pain meds for 12 hours following the procedure. We concurred with their judgment. We saw Grayson after he arrived in the ICU for his overnight stay. He was sedated and sleeping, and looking angelic. He was on a ventilator as is protocol for the sedation. He showed some signs of discomfort, and pain medication was administered. Given that he was going to be kept in a sedated state overnight, Regina and I thought it best to get rest. We headed home to eat and get to bed. We'll be back at the hospital at 7:00 AM to be there to wean him off the sedation and to extubate him. Regina's presence is a great calming force for Grayson. She will manage his transition from sedation to awareness with great skill – as always!

So tonight Regina and I are both home, and I am minutes from going to bed. Tomorrow we expect to be a long day at the hospital, but we hope we will all be home tomorrow night. Stay tuned!

And while seemingly not a great birthday present, the gift of life is the best present of all. Happy Birthday, Grayson. We'll celebrate your birthday over the weekend!

Pax!

Brant

Day 1683 – Grayson’s Journey

Today is Grayson's 29^th birthday! It is incomprehensible that 29 years have passed since his birth. So many memories. So many gifts of love from Grayson and all of our children.

It has been 7 months since I have last posted. I have put in a lot of Facebook chatter about our ski adventures, but the blog has gotten too much to maintain on a daily basis. Or weekly or monthly for that matter!!

Today Grayson is off to the hospital for a necessary replacement of his implantable cardioverter defibrillator (ICD). These devices have a battery life of between 5 and 7 years, and Grayson tends to chew up the batteries on the early side. This will be his third since the first was implanted in 2004 during his freshman year at USC. The last replacement was three weeks prior to the incident that became the subject of this blog 1683 days ago.

We are hoping for good care as he will be at the Keck Hospital of USC – don't alumni get extra special treatment? We can hope! He will be in the hospital overnight and if all goes well, we will all be home on Friday. When Grayson is in the hospital, so is Mom. Regina will be by his side to make sure he doesn't pull out his IVs, PICC lines and monitoring devices. Sleep is something that she will get after he gets home. If ever any of you wonder why we celebrate Mother's Day, now is a good time for some introspection. A Mom is there for you until she can no longer carry the burden. That is a lot of hefting for a lot of years. Perhaps we ought to appreciate our Mothers monthly or weekly, rather than annually on Mother's Day. Just a thought.

Today, we ask for prayers – that God will guide the skilled hands of the doctors, nurses and technicians to care for this sweet and very challenged young man. May His will be done, and may Grayson return safely to his cozy bed at home as swiftly as possible. Amen.

Pax!

Brant